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Clinical Trial - Week 16

5/23/2017

Madi and her Mom Colleen traveled on Sunday to UCSF. Scans on Monday and a couple of appointments today, results in brief:

While the watch-item tumors are not larger or smaller, they are deemed medically stable. The alarming (okay terrifying) amount of fluid that was building up is now there is zero... none, zip, zilch, nada: While ideally the meds obliterate any/all tumors, we're also realists and consider this very favorable news considering it's only been 16 weeks.

Another win: her liver counts had been slowly increasing since she started the meds in January. All blood-work today was reported within normal ranges, including her liver. Hallelujah!!

If you're interested in the science about the meds Madi is taking, more here.

Thanks for your love, prayers, and positive energy!
Love,
The Jones Family

Madi's Dogs Bailey and PJ

5/19/2017

Raccoons can be mean, especially if cornered... and Madi has two small dogs. Last Sunday there was a raccoon peering the sliding glass door so on Monday, a raccoon trap was set. The raccoon seemingly had been trapped before because he/she ate the bait leading in to the trap, but didn't go inside and trigger the trap to close the door. Okay, wire mesh... who'd walk on that, aye?! So, we set up a Palapa... welcome raccoons!

Whelp, that didn't work either. Same some song, second verse. Drat! Despite covering it with towels and welcoming Palapa entrance, the raccoon wouldn't fall for it and ate only the bait leading in to the trap. The next morning, Madi's dog Bailey did. Hearing a soft 'woof... woof... woof' from under the towels covering the trap, a bemused Bailey while appreciative of the treats in the cage... wanted out.

We thought about putting another sign up for example "Free Raccoon Food", but clearly millennial raccoons can read. Either that or they'd been trapped and released prior so a new approach was warranted.

PJ! We'll try his this for the next week or so : )

All that said, next steps for Madi: She turns 22 on Saturday, and on Sunday she and her mum Colleen will travel to San Francisco for a CT scan, blood-work, EKGs, and another 28 days of the trial meds. Updates to follow and thanks for following along, for the love, and prayers.

The Joneses

May 17th, 2017

5/17/2017

G'day all, a brief recap: In late November the chordoma cancer actually metastasized to her lung and chest, prompting an alarming (okay a bit terrifying) amount of fluid that required a catheter (a drain). The amount of fluid was increasing visibly and during it's peak, 2 liters build up over a 10 day period (exactly, 2 liters... holy sh!t Batman).

In late January she started a clinical trial, "Tazemetostat". Traveling to San Francisco every 14 days, she had extensive blood-work done, EKGs, and a CT scan at the 8-week mark. Here and now she's 15 weeks in to the trial. As we watched the amount of fluid build up prior to the meds, the misbehaving buggers (tumors) appear infinitely less angry, and the watch-items her shrunk ~25%, so medically labeled as "stable". At 30% or more, it's considered "remission". Next week another trip to San Francisco and during this visit, another CT scan. Her friends and family are hoping and praying for a radical remission with no impacting side effects.

Given the buggers stopped the fluid build-up, Madison had the catheter removed from her chest/lung her last week! It was a big pain in the back afterwards but she's got some bounce back in her step now... actually went to the gym last night and gave a treadmill what-for!

Madi posted this picture on Instagram... (her profile is madirose_j if you want to follow her... and you didn't hear that here : )

The power of the Force is clearly very strong in this beautiful soul, helped by the people who love and pray with and for her. We'll post an update early next week.

Thanks for the prayers, positive vibes, and for walking beside her in this journey.
Love,
The Joneses

Clinical Trial - Week 16

Madi's Dogs Bailey and PJ

May 17th, 2017

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